Les communautés en ligne de malades de la Roumanie
[Les communautés en ligne de malades de la Roumanie]

[nouvelles frontières ou nouveaux territoires?]

Summary/Abstract: Illness narrative is the story that the patient tells in order to organize the events and the long journey of personal suffering. The main theme, the central metaphors and the rhetorical processes that it uses represent the structure that follow personal and cultural patterns defining the experiences of the disease in a meaningful way for both patients and doctors. Communities of patients with chronic diseases (cancer) can provide information about the condition and treatment for other patients and physicians, becoming important sources in medical communication. Among the different forms of social media (blogs, newsgroups, Twitter, Facebook, etc.) used by patients, online communities have a unique character: they tell a story that covers many aspects of illness and treatment,providing an overview of the disease in its evolution. In the existing academic literature on communication about health and disease, the impact of these communities on patient lives has been modest worldwide and almost absent in Romania. Whereas in other countries the situation is a direct consequence of the limitations of the research process, in Romania’s case one can speak of a genuine “taboo subject” in medical communication. The article attempts to fill a gap in the literature of our country. The purpose of our study is to present an in-depth analysis of the ways in which dialogues on chronic diseases are built in the virtual environment in Romania. As our research methods, we used discourse analysis and virtual ethnography applied to a sample of online Romanian communities which focused on cases of incurable disease (cancer).The results indicated that the narratives used within the online communities of Romanian patients comprise two main sequences: “the sub-narrative of the diagnosis” and “the sub-narrative of the therapy”. The two sub-narratives were characterized by dramatic tension, emotional engagement, signs of lack of control over personal life and depersonalized reference to medical personnel.The results also showed that online communities of sick people establish their own territory (which is somewhat juxtaposed with the disease itself) and place the borders not only in relation to health and illness as issues, but also in relation to others. The disease has become, as such, a well defined space where only some people can live and survive even in the online environment.

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